A new look and waiting

This is still the blog of The Hill Family but with a new name and a new look!  We decided the blog needed a new, simpler look and while we were at it, decided to change the name (URL) as well.  But don’t worry if you are already subscribed to get updates via Email or RSS you do not have to do anything! you will continue to get updates just as you have before.  Also this does NOT mean that our email addresses have changed.  Our email addresses are still at micah77.org.

As we enter a new phase of post-treatment waiting we came across Psalm 46:10 “He says, “Be still, and know that I am God;  I will be exalted among the nations, I will be exalted in the earth.” (NIV).  We find this to be especially powerful in times of waiting.  Also 1 Thessalonians 4:11 says “and to make it your ambition to lead a quiet life: You should mind your own business and work with your hands, just as we told you”.

So what is it that we’re waiting for?  Well news!  As you may know, after about 10 days of receiving my TIL cells, a severe toxcisity developed in my liver.  It was very clear that the newly infused, genetically modified cells were the cause, but why?  Basically some of the best doctors in the world told us, “Well dude, we just don’t know.”  But it was getting so bad they decided they needed to remove and/or kill my newly infused cells ASAP or I would only live about 3 more days.  But they weren’t sure if they could do it.  After all this was not part of the plan, the cells were only supposed to generate an immune response, not have a frat-party in a major organ!  But, praise God, through more chemo and a process called plasmapheresis, they were able to kill/remove the newly infused cells.  This in combination with massive amounts of steroids (to calm down my liver), they were able to save my life.  But if they reversed the treatment, what does that mean for the cancer?

Good question.  The data (in mice) shows that having the TIL IL-12 modified cells for 10 days is a sufficient amount of time to generate a positive response.  So what do we mean by “response”? In melanoma there are basically 3 categories of response.

  1. Stable Disease – This means that your immune system is able to “hold” the cancer where it currently is and not let it get any worse.  Also called “progression free survival”
  2. Positive Response – This means scan results showing 30% regression or more (tumors are 30% smaller than they were on previous scans).
  3. NED (the holy grail) – This means that scan results don’t show any cancer at all.  Note: this is not the same as remission: it take about 2 billion cells to show up on a scan there may be very small deposits of cancer that are undetectable on scans.

So where am I  now?  My first set of scans (7/15/13) shows “Stable Disease” meaning no progression since the scans done immediately before treatment.  This was to be expected because my body is still recovering and most likely not really able to mount a response just yet.  But my next set of scans (8/14/13) will be the real determining set.  These will show either 1, 2 or 3 above.  So until then we aim to “Be still, and know that I am God”.

It’s good to be “home”

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I can’t believe it’s taken me this long to find time to sit down and write a real post again!  But I’ll be honest with you, with the kids back and all the business of hospital life and family coming and going, if I’ve had a minute to breathe, I was sleeping!  For those of you following Facebook (www.facebook.com/hillfamilyfighters) you already know that on Friday June 28, Kevin was moved to the ICU and given about three days to live if his liver didn’t recover.  After a week in the ICU and the Lord working many, many miracles, Kevin was stepped back down to 3 Northwest.  Oh, I’ve never been so glad to get back into that hospital room!  And to think, just a little over a week earlier, I was sobbing in that room, wanting to go home, wanting to have our kids back, wanting everything to just be “all better.”  Well, God ALWAYS answers prayers, even if it’s not the way we think they would be.

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Here comes the sun

Warning:  I use the F word and the S word in this post.  I use it not in vain, but to make a point.  I hope you won’t be offended, but if you think you will, you might want to pass on this post.

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I find it so hard to write in the ICU.  There are constant beeps and buzzing and the intermittent sound of the oxygen tanks starting up (which Kevin refers to as the “launch sequence”).  For as much as it’s hard to write, it’s even harder for Kevin to sleep.  We thought the interruptions on his regular floor were bad, but they are nothing compared to the ICU.  For one thing, he doesn’t have a regular door.  It’s a glass sliding door, so all the light and distractions from right outside his room are constantly spilling in.

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Then, every time the door slides open, even if it’s relatively quiet in his room, the noise from everyone else’s machines keeps us in a feeling of anxiety.  So I have slipped out for a few moments to try to write something coherent.  I found a beautiful little sitting area bathed in sunlight.  A gift.

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Today marks seven days that Kevin has been in the ICU.  Even though God has granted us mercy by saving his life last weekend, we are constantly reminded that things are still VERY serious.  Every day since Monday, there has been talk of him stepping down from the ICU.  And every day something has happened to make the decision for him to remain.  Even if he’s feeling relatively well and was finally able to dress and get out of bed yesterday, the fact alone that he is still in the ICU means that things are critical.  It’s been hard to wrap our minds around that.

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Even when they told us last Friday how serious things were, and that if the interventions didn’t work he’d be gone in three days, he felt fine.  Well, as fine as you can feel after you’ve had your entire immune system destroyed, a new one infused and carefully grown, and then the new one tries to kill you.  But still, he was sitting up, working on his laptop, able to walk around some.  It was hard to understand where we stood with things.

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After the drama with our nurse on Monday and Tuesday, both Kevin and I were pretty well on edge.  And on Wednesday, we both had our long overdue meltdowns.  I got to have mine in the morning and he waited until the evening to lose it.  We both cried and cried into each other’s arms.  We have both been so scared, and also so overwhelmed with where we are.  The biggest thing that has hit us both though, has been, why hasn’t it been worse?  I see folks in every room of the ICU except his who are hooked up to breathing tubes, feeding tubes, lying semi-conscious, looking like they are at death’s door.  And in some sense, they are.  And it’s a terrifying thought for Kevin that he might ever get to that state of helplessness.  But as we cried and talked, we were both so convicted about how selfish we have been.

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As we cry out, “God, why us?”  the true cry should be, “God why not us?  Why isn’t it even worse?  Why have we been so well cared for?  Why is Kevin NOT hooked up to a million tubes instead of just a few thousand?  Why were we granted mercy and another day?  And another?  And another?  And another?”  In fact, as we broke down and God melted our hearts, we were so incredibly convicted of the truth that maybe we’d understood, but never really submitted to.

We are sinners.

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 We have heard people say to us, “Your faith is so strong.  You guys are amazing.  You are such a great caregiver.  You are such a strong fighter.  etc. etc. etc..”   And after a while, we started to believe it.  Without even realizing it, in the midst of our gratitude, we started to feel a sense of entitlement.  Yes, we thought, we do deserve for Kevin to be healed.  Yes, we do deserve for the church body to rise up and care for us through meals, money, gift cards, time, prayers, etc.  And without even knowing it was happening, we became selfish.  Or really, we already were.

We both praised and thanked God again and again for saving Kevin’s life last weekend.  But by Monday, we were grumbling about being stuck in the ICU.  Kevin was grumbling about wanting to get back to his Tempur-Pedic bed on 3NW.  I was grumbling about his nurse, my sister, my back, my iPad.

How quickly we can forget God’s mercies.

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That night, after having more than a few good ole cries, we dropped to our knees as best as one can in the ICU, held hands, and asked God to forgive us.  We thanked God for His mercies.  We thanked God for His many blessings He has bestowed upon us.  We thanked Him for sending Jesus to take our place, because we knew, we just knew, that however real this felt in that moment, we’d sin again.  We needed Jesus now more than ever.  Because sinning seems to be what we humans do best.  Or in less elegant words.  We fuck up.  a lot.

Forgive my language, but I feel it’s important.  The word sin has been used in so many ways as to almost lose its meaning at times.  I think the reality is that, in the words of a favorite movie of ours, “I think we might be fuck-ups.”  And somehow we never fully realized it before now.

That’s the thing.  A fuck-up doesn’t intend to be.  It’s not really on purpose.  It’s just that he screws things up again and again and again.

And it’s so incredibly convicting when you realize that you’re not this awesome person deserving of the blessings of God, but instead, a royal fuck-up.

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But then, and this is the good part, we remember that God LOVES the fuck-ups.  When He sent His son to earth, Jesus didn’t hang out with the super spiritual people, He hung out with the losers… the ones who could never quite get it right.

His closest friends were fuck-ups.  Time and time again, Jesus would show them a miracle, and have to say to them, “Don’t you see?  Seriously?!  You don’t get it?”  And after seeing miracle after miracle and literally walking in the presence of God, those same friends were the ones who ran away scared when the proverbial shit hit the fan.

We truly thought Kevin was going to die last weekend.  We knew he might not, but also understood it would probably take a miracle.  And then God gave us miracle after miracle after miracle!  But amazingly by Monday we’d managed to forget and run away scared, just like the disciples.

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There was a Catholic Chaplain intern who came in a few weeks ago and sat with me and let me pick his brain for a bit on prayer.

One of the simplest prayers he shared with me, for those moments when you don’t know what else to say, is this:

Lord have mercy on me, a sinner

As I heard it, my pride even then didn’t like the idea of that prayer.  Yet now I understand.  And now I pray, we both pray, and we know we will need to pray again, and again, and again, and again:

Lord have mercy on me, a sinner

We have a 90% chance Kevin will be leaving the ICU today!  We are overjoyed to get back to his other room, the one that only a week ago I was desperate to go home from.  We will probably be there for a loooong time.  Lord, have mercy on us.  Grant us patience today and tomorrow and the next day.  Grant us graciousness to stay in 3NW as long as it takes for Kevin to recover.  Grant us joy and remind us of the miracles you have worked in our life.  Thank you for giving us another day today.  And when we forget, and begin to grumble,

Lord, have mercy on us, poor sinners.

Lord, THANK YOU for having mercy on us, poor sinners.

Sort of an update


Rachel here: I keep trying to find a minute to write a real post but this will have to do for now. Yesterday was a very rough day for me because of an issue we had with an ICU nurse. In the end, I opted to stay away during the rest of her shift. Kevin’s docs are working on a resolution and my biggest concern, that things she said to them which were untrue do not affect my equity with Kevin’s team. I need them to know that if I come running it’s a big deal and that I know when it’s an emergency and when it’s not. Anyway, it has really hurt my heart a lot to have experienced this issue and especially since, after a lot of prayer, I feel God has told me that there will be no way to resolve this with her directly, and so for now I pray that we will be given different nurses for the rest of his ICU stay and that he will get out of ICU soon!

Please pray for my heart as it is very wounded right now. And also please pray for nurse T, as things are never black and white and I know this has troubled her too. I am reminded of a saying, “Be kind, for everyone you meet is fighting a hard battle.”

I would also like to simply reach out and thank you all again for your support and specifically financial donations. We are starting to hear rumblings that Kevin won’t be going anywhere any time soon and so it would give us much peace to be able to batten down the hatches with a little bit of extra padding financially.

If you feel so led, we would be grateful for anything that could help cover the bills next month. Or if you would like to help out with paying a specific bill, please reach out to Sarah Thomas to coordinate that.

When we are ready to come home (soon! Please Lord let it be soon!) we could use some help with meals, gas cards for the drive back, and grocery store cards, but for now the most pressing need coming up will be financial.

Please do not feel burdened to give. We are ok for now but God has taught me so much about being humble in making our needs known and so I am following obediently in an effort to stay on top of our finances for the time being. Thank you again.